our diet...4 days down 38 days to go

So this is as good as my meals look these days......Kris and I are on a diet called "smart for life" it is a cookie diet. We are allowed to eat cookies, and cupcakes, and soup packets, and shakes....none of which are 100% terrible, but they aren't 100% desirable either. So after having cookies and cupcakes all day we get to have a "normal" dinner.....normal meaning pretty much nothing good....lots of salads with chicken. Or a few nights this week I had some turkey and chicken roll-ups with fat free cheese.

It seems to be working well so far...Kris is down 8lbs since Monday and I'm down 5lbs. We realize a lot of that is probably water weight, but hey weight is weight!

Wish us luck. We so far have stuck to this diet 100% and both want to lose the weight!

i must be bored.......

because I can't stop myself from finding new things to update/remodel my house with. This past week it happened to be stuff for our half bath. I bought this picture with the orange flower to brighten up our dark half bath. It actually worked quite well. Then I found a new candle holder and the perfect color bird that matches perfectly with the bathroom.....it was by no means a big change but enough change for it to be different! I'm happy with the way it turned out. Loving Marshall's for their clearance section! Great store!

POPCORN FUN

Kris brought home a popcorn machine from work yesterday and so the boys decided to make some popcorn. Owen and Wyatt had a lot of fun waiting for the popcorn to "pop." Here are the boys patiently waiting for the popping to start.

Owen can hear it but it hasn't started coming out yet.....so exciting!! WOW!!! Popcorn and lots of it......how cool!

After the popcorn was done we watched Owen's favorite Thomas the Train movie starring Diesel 10 and Alec Baldwin!!

another update

got a call from my rheumatologist yesterday with blood work results. all of my inflammatory markers (ESR, SED rate, C-Reactive Protein) came back elevated which shows that the disease is still very active. She was not surprised after my recent visit to her. She also said my WBC is high which is likely due to the dose of steroids I'm on and that my hemoglobin is low which they are going to monitor.

I had my CT/Pelvic scan today. It went okay, as good as it can go I suppose. U of M is very efficient in everything that they do and I was in and out of there in under an hour and a half.

I haven't felt great since I've been home, have a splitting headache and my stomach is in knots....and I still have the contrast taste in my mouth that I can't seem to shake!! I don't know if it is the injections making me feel bad or what but I'm hoping I can just sleep it off tonight.

I should find out results from CT scan on Monday or Tuesday of next week. Hoping to not hear anything....no news is good news, right?

My first Anakinra injection....so far so good!

So after a long wait of well, waiting for my new injection medication to be shipped to me.... I finally received it today in the mail....it came in a huge cooler- complete with a sharps container and probably a month supply of medicine which will dwindle down quickly I'm sure since the injection is daily.

And the best part is that I did my first injection myself....i'm sure it took longer then it would have if someone else did it, but I DID IT MYSELF and for that reason I now know that I can do it alone with no help!! It did burn quite bad as the medicine was going in, but other then that I can't complain....I'm sure (well doesn't really matter I guess) my body will just have to get used to it..........

BECAUSE

After just 5 hours after giving myself the injection I can completely, 100% make almost a complete fist with my left hand. I can still feel some swelling in my fingers but I haven't been able to make a fist in weeks!!!!

So- wish me luck! Keep those prayers coming that this may finally be the medication needed to help knock all this disease out of my system....I was beginning to think that there would be NOTHING that would make me feel better and was honestly very discouraged with the way I was feeling considering that I have been on SO many meds with little relief.

Friday I have my CT scan and pelvic scan. They called me and cancelled my original CT scan this week for no reason other then "your doctor cancelled it." I was very let down about this and perplexed until I received a call about an hour later to reschedule the CT scan with a different body protocol. They are doing a hip scan to look for ventricular necrosis. Not sure exactly what that means other then per Kris "deadening of the veins." So we are praying this isn't the case and that the scan will come back normal, or at least if it is something abnormal will be treatable. I SO badly desire to get out and run outside and just get my body back to the way it was before I got pregnant with Wyatt.

But again, I can't complain and don't mean to sound like I am complaining....my blog is my way to express my feelings. I'm not great at expressing my feelings verbally, never have been good at that.....so what you see here is me being ME....plain and simple! ME!

My haven

I love, love, love my bedroom! When I wake up in the middle of the night and I can't sleep I just sit up in bed and find complete peace and comfort in my surroundings. The lighting is always dimmed perfectly for sleeping and the shadows from the three pictures on the wall across from the bed just provide so much dimension. I do love to decorate and take pride in how my house looks but it isn't often that people get to see any pictures from the upstairs level of my house....so here goes....hope you enjoy seeing my haven as much as I enjoy being in there!

Wyatt 10 months...a better picture!

Here is a better picture of our sweet baby boy..... 10 months old already!! He is just adorable....and man oh man, those baby blues! He has his daddy's eyes for sure!

Wyatt is 10 months!

I promised a picture of Wyatt man since I haven't posted a 10 month picture of him yet! Well here you go......we let him go for a truck ride this weekend with Owen. By the time I ran in the house to get my camera and came back outside, Owen was already done driving the truck.....but I was still able to capture this picture of Wyatt! He looks huge to me in this picture. He is getting quite big. He has four teeth on top and two bottom teeth. He is walking like a champ- practically running! And he remains a good, sweet, little boy. But he does have a little bit of a stubborn streak in him like his momma......I was thinking Wyatt was just like his daddy but his personality is shinning through a little more every day and boy of boy between him and Owen, Kris and I are going to be in trouble! But we continue to love them to pieces!!

My mom is a celebrity!!

So proud of my mom! In 2004 she was diagnosed with stage 4 breast cancer.....after many treatments we learned that it spread to her lung and then to her brain twice. She underwent cyberknife treatment a non-invasive surgery for the tumors in her brain. After a long hard battle with a lot of unknowns I am blessed to say that my mom is still here and in REMISSION. She was and remains to be so strong and such a fighter!

She was recommended by her doctor who also is in charge of cyberknife at St. Joe's Hospital to do a photo shoot for cyberknife media. She was told that her picture may be used in print ads, commercials and maybe even a billboard. Well, Julie was driving the other day and almost drove off of the road as she passed this billboard!

My parents took all the boys for a drive today to look at the billboard. How cool for them to see their Nana on the sign! What lucky boys they are to still have their Nana to share with them her victory!

Love you mom! Thanks for fighting, thanks for being strong, thanks for being you!

Update from feeling well, BLAH!

After about two weeks of just feeling pretty miserable with a constant care sickness feeling and a slight headache and continued swelling and discomfort in my fingers, hands, wrists and hips I finally decided to email my doctor. She responded right away and was quite concerned since I have been on high doses of steroids which usually makes all of my symptoms disappear and makes me feel like I'm on top of the world......but this go around I have no energy and just continue to feel really crummy! She set up an appointment for me on Thursday.

The appointment went okay- the doctors still appear to be a little flustered about me. The swelling is obvious so I'm thankful they are able to physically see it so they just don't think I am crazy.
I will start a new injection medication called Anakinra, it is a daily injection. I was supposed to have started it already however it is a specialized pharmacy medication so it has to be mail ordered. It should arrive on Tuesday as there were some initial problems with the script and getting a hold of my doctor's office.
I will still be on the methotrexate injection as well......so we shall see how that goes. I just did another injection on Thursday night and so far I still have most of the swelling in my fingers of my left hand and overall soreness in both hands/wrists/arms.
My inner hips have also been sore lately, so they are going to do a follow up CT scan next Friday to check my hip function and also to check on that spot that was suspicious for lymphoma that was previously found on the CT/PET scan from December. They just want to be sure that they aren't overlooking anything.
Also- at my appointment was the first time that I have heard this, but my doctors said that what I have most closely resembles Adult Stills Disease, I just don't have every symptom.....there was also talk of inflammatory bowel disease being the underlying condition since my biopsy results from my colonoscopy weren't completely definitive.
I gave more blood at this visit and I guess at this time it is just a waiting game to see if this new injection will work.....if it doesn't work then they will switch the second injection to Humira, but Anakinra is supposed to be a quicker acting injection so we wanted to see if I would experience relief from that one prior to starting another injection that I won't notice visible results soon.

All in all, I have been trying to stay positive despite the fact that I feel completely run down and it hurts to lift/hold my sweet baby or really do anything with my hands such as strap Wyatt into his car seat, buckle Owen in to the car, turn the car on, do laundry (those buttons on the washing machine and dryer are a pain). You don't realize how many things affect your hands/fingers. And unfortunately for me with two little kids I find out exactly how many things there are on an hourly basis several time throughout the day.

Positive NOTE- I find that when I take a very hot shower that I can move/bend my fingers on my left hand. I just kind of try to make a fist and really get the range of motion back, and it feels great that I can move my hands......so Kris filled up the hot tub last night and hopefully that will help with at least making me feel better for a half hour or so every night. I'm super excited!

Have a great day and a happy weekend......I will be posting a picture soon of Wyatt man....he is 10 months! And walking so well! Practically running!

Lastly-
****FUNNY STORY ALERT****
Kris took the boys to Canton yesterday to spend the day with his mom. Kris said that they were about 3 minutes away from his parents house when out of the blue Owen said:

"FACT- we are almost to grammy and grampy's house."

I don't know where this kid comes up with this stuff, but he surely is our little entertainer and we love both him and Wyatt to pieces!

K

Happy St. Patrick's Day...Early!

Really?

Well, back at it! Can't seem to sleep....so while I am sitting here in my comfortable chair in the corner of my bedroom I was thinking to myself, why can't I sleep?

And then I realized that I am on 8 prescription medications, 3 vitamins on a daily basis. And on top of that, I am on the methotrexate injection weekly. I just had the fullest dose last night so I am hoping that in a very short period of time I will start seeing visible results in the way I feel.

The funny/ironic part is that I am on a sleeping medication....it says online that the pill is supposed to be used to treat depression/anxiety disorders and also is used as a sleeping agent. Well, I have news for you Trazadone.....you don't seem to do anything for me!

On the plus side my hair this morning seems so full and shiny and thick! I was fearful that since the methotrexate is used as a chemo drug and one of the side effects is "hair thinning" that I would inevitably have to deal with some hair loss.....not sure if it is the folic acid that I am taking or what, but I am liking my hair! I have a meeting later this morning and am actually thinking about wearing my hair down today (which I NEVER do).

So this is my random post for the day......just a lil tidbit of information. I do wish that I could sleep, when I do sleep it seems to be a sound sleep, just not for more then a few hours.

I just have to keep telling myself, this too shall pass! And I am thankful and BLESSED beyond belief! I really have nothing to complain about so I just need to try to make the best of it!!

Fun in the sun! Well, fun in the water at least!

No sun in Michigan quite yet and the snow is still falling, but we are so happy that we were able to sneak away for a few nights and enjoy some much needed family time. Here are Owen and Wyatt playing (rather posing) on a turtle animal they had in the kiddie pool. Owen was awesome in the water park, was very independent and had a great time.....for the most part. He went down one of the big slides with Kris and when they came out at the bottom their tube flipped over and Owen went under water....he doesn't like going under water and was quite scared thus his sad face! He was a trooper though and continued to ride down the big adult slides with me and Kris later during our stay.

Here is right after they flipped. Oh how I hate seeing my boy so sad! Thankfully his daddy protected him!

Me and Wyatt hanging out in the lazy river. The water was warm and other then the fact that I had to constantly duck out of the way of falling water buckets of water and other waterfall type of obstacles, we enjoyed our lazy river down time. We must have cuddled for almost 45 minutes. It was great!! It helped that Wyatt was exhausted so he didn't move around much and just let me hold him and sing to him.

I love this picture of me and Wyatt....it was the best I could do since I took it myself. I know he isn't looking at the camera, but he is looking at his momma....so SWEET!

Another picture that I took, I love this one too....Wyatt's eyes are so blue and he has the cutest little look on his face!

Owen on one of the many water slides. This was actually the smallest of the water slides. I didn't dare take pictures of the other water slides because I didn't want my camera to get wet. Owen looks a bit frightened in this picture but he really wasn't...he loved this slide!

We can't wait to go back....Owen can't stop talking about the big 400 gallon water bucket that kept dumping water all over the park! It was a great trip and exactly what we needed!

Fun at the arcade!

The second half of our trip was spent at Zehnder's Splash Village. This place was great (the arcade, not so much. The arcade at Bavarian Inn is WAY better) But it was also kind of nice that it was a small arcade so we could get in and out of there without spending our life savings. Owen had a great time! Wyatt as always was as content as could be just hanging out with his family. Owen played lots of fun games! Most he knew how to play by himself but some he needed his dad's help.

Here are me and my boys- Owen was super thrilled to have YET another picture taken and only cooperated because threats were made! :o)

Here is Owen riding the roller coaster game....he was less then enthused about this ride!

Playing some guitar hero is always fun, but their guitars were about 30lbs each, so Owen had a hard time holding it up.

After our $10 at the arcade ran out we headed up to the room and both boys fell asleep within minutes. It was such a fun trip! We are going to make it an effort to go at least 2x per year....hopefully!

Frankenmuth 2011- Part #1

We made it to Frankenmuth...got a killer deal at the Bavarian Inn for an overnight stay so thought we would bring the kids up for a few nights since Kris is on his Spring Break this week. I have Nathan 3 days a week so we picked him up from school and headed straight up here. Jim and Tami met us later in the evening with Nickolas. Here are Kris and the boys in the pool....they had a blast! Here are all the boys all cuddled up in their towels, minus Wyatt, he doesn't really seem too interested in the water so he was mostly dry.

But thankfully when Wyatt did give the pool a try I snapped a cute picture of he and his daddy!

Does this picture really need a description? I don't think so. Owen continues to be our adorable little stinker.....so sweet and innocent and yet can be so evil at the same time. Tonight we had an issue with him in the arcade....he didn't want to turn in his tickets for a prize...he wanted to KEEP all of the tickets that he had won! So Kris basically ended up dragging him out of the arcade while Owen was kicking and screaming and throwing a tantrum. Hopefully tomorrow morning we can go back down to the arcade and he will FINALLY pick out a prize! So after all of that drama tonight, we come back up to the room and with the sweetest look on his face Owen asks me "is this apartment our new home?" As you can see we don't get out much and at that Owen is used to traveling with the fifth wheel, not staying at hotels.....it was very sweet!!

More pictures to come later, but thought I would share the few pictures that I took today. Enjoy!

Nights like these I love my job

It's nights like these where I love my job.....Owen and I are cuddling before bed and I have my computer out trying to get some work done. Typing with one hand and giving my boy a back scratch with my other hand......it doesn't get much better then this! Don't get me wrong.....there are plenty of times where it is very hard to separate home and work life while working from home, but I wouldn't trade it for anything! I love being home with my boys! LOVE IT! I know that I am very blessed to have such a wonderful opportunity and a great company who trusts the work that I do from home....SO blessed!

WYATT IS WALKING!

Just shy of 10 months Wyatt is a little walker! He is so stinking cute all of the time. This particular day he walked over to his/Owen's chair and crawled right up in it and started smiling and was just having a blast! Here is our adorable little stinker clapping! He really is a very happy baby.....we are SO blessed at how happy and content he is! Love this child!

Pine Car Derby 2011

Another year for Owen at Cornerstone's Pine Car Derby race. This year Owen was a little more involved and I hope that each year in the future will be more and more exciting for him. Kris helped him this year with the actual car shaping/molding or whatever you want to call it, however Owen painted the car all by himself and put on a bunch of police stickers/decals. He said it was his police racer car. He did a great job! We were proud! Below is a picture of Owen getting his medal (all kids in his age group get medals, but hey he still thought it was pretty cool!) Owen's car is the third car in from the left, it is yellow with all of the stickers on it.....not bad for a 3 year old, and yes he decorated it all by himself.

Wyatt loves the dishwasher!

Without fail every time I either load or unload the dishwasher Wyatt is crawling over as fast as he can to try to get in it. I think this particular day I finished unloading the dishwasher and then ran the trash outside and when I came back Wyatt was literally in the dishwasher.....never a dull moment at our house!

An afternoon at GG's

We were all tired, however my mother-in-law was the lucky one who scored some nap time with Wyatt man.....a nap and a good cuddle, what is better then that?

Owen had fun playing with all of GG's blocks. He built a HUGE tower and was so excited that he could keep on adding to the tower without it falling down.......but.......
Grammy was a bit skeptical at how high the tower was going to get before falling down so she sheltered Wyatt so that he wouldn't get hit by any blocks......I think that this was the final block before the tower collapsed....and no Wyatt didn't get hit by any blocks but he didn't like the noise the falling tower made and started crying hysterically. Poor boy!

GG is doing a lot better....she was up and walking a little without her walker. She has good days and bad days but thankfully Kris' aunt is in town for the week to help take care of her and get her up and running. All in all we had a very nice visit today!

Me and my boys.....

chilling out at home after a busy weekend......love them to pieces!!

Another appt

Went to the rheum today for a follow up visit and again got my prednisone increased.....they just aren't happy that I am still having flairs every time I decrease the steroids......also tomorrow night I will jump a dose of my methotrexate, which means that after tomorrow I will be on the full dose of that med....the hope is to get me on the full dose ASAP and then hopefully decrease my steroids once and for all as long as my symptoms/pain are managed and controlled on the plaquenil and methotrexate.

I am about to take my first sleeping pill....the doctor is hoping that this will help my body heal and I will be more refreshed and have more energy as a result.....I am kind of excited to finally get a good nights sleep.

FUNNY STORY ALERT!!
I took both boys with me to my appointment today...it was a big mistake but they were both truly wonderful and well behaved considering how boring it was waiting and waiting and waiting.....

while checking out the girl at the desk couldn't figure out what my diagnosis code was. After being in the office for about 2 1/2 hours, I wanted to leave and the boys had had enough...so finally after waiting patiently for a few minutes I politely (with probably a rather annoyed look on my face) asked if it was too much trouble to look up my last visit and see what I was billed for. She said she was almost done when all of a sudden Wyatt just started crying hysterically. I turned to him trying to find out what was the matter and he had these HUGE crocodile tears streaming down his face. An older African American man was about three feet away from him and looked up at me and said "Is this the first time he has seen a black guy? I just winked at him!"
I was mortified!! and embarrassed!! Everyone in the office was laughing. Thankfully the guy felt bad for making him cry.....needless to say we high-tailed it out of there!
Gosh, you would think that my kid would act more civilized! :o) Poor Wyatt, so scared!!